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Reaching Out

I got a phone call Wednesday afternoon. It was a conversation that lasted 51 minutes and 57 seconds, not once during which I yelled, begged or felt hot tears welling up behind a headache fueled by stress. Nope. This phone call has left me lighter, although I wish physically, mentally. In fact, I feel like a feather.

When Dr. Shurr sat down with us on June 22nd and told us about Addie’s diagnosis, I immediately began to research. Everything that came up was negative. From the media portrayal to stories of surgeries and even deaths. It was heart breaking. I felt guilty. I felt sad for Addie. I wanted to do everything to make life easy for her, and was left to feel like all I had done was make her life difficult.

So I did what I do when I need to vent.
I wrote.

I blogged and was inundated with response from a whole new community. A loving and understanding community- complete with information no doctor had presented me with. I was relieved to find so many blogs with information, but where was the medical community on this one? Why did it seem that no one besides other parents knew about Achon babies?

So many people reached out to me, many emailing and sharing their stories and all they knew to help Dave and me navigate Addie’s future, and for that I am so grateful. One mom, in particular, went so far as to call me. She is the phone call.

She shared her story about her daughter who is nothing shy of beautiful, and is completely average in all she does, except her height. She does everything her older sister does, including scaling the stairs of their multi-level home, and does it with panache!

Since I began this week with a healthy does of puff, I wanted to end it with another light-hearted piece, filling your week with the sustenance of life: compassion.

This mom spends her days helping other parents who are just learning about dwarfism, understand what lies ahead for their child, and know that there are good stories out there to go with the “bad”. Sometimes achon kids and adults need surgery- average height children and adults are no different. Achondroplasia doesn’t have to mean a new home, not having other children or a constant battle with insurance- sure these things may present themselves in different was; a stool in every room, a sibling who needs to understand their sibling has a few limitations, and an unruly agent who needs a lesson in LP, but for the most part, it’s all going to be OK for Addie. She is my little blessing, as every baby is to their mother. I love her- big or small, and I am so excited to journey through life as a mom learning all I can to make Addie’s life the best it can be for her before she ventures out and changes the world!

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Comments

Michelle, I JUST read this and learned about beautiful Addie and the diagonosis. I’m so glad you’re writing and that it’s lead to a huge support community for you. I think the world has advanced some recently, particularly in light of some recent reality TV surround Little People.
Be brave, she’ll fight and grow and learn her way in the world. She’s absolutely BEAUTIFUL!
Love to you all

About me:

Philadelphia-native-turned New Englander, I'm mom to Adelaide Eileen and Camille Thea, and wife to Dave. A is For Adelaide began as a blog for parents of children with special needs, specifically dwarfism, to come and learn. Over the past few years, it has evolved to all things parenthood, fitness, food, DIY, reviews and lifestyle. I advocate for dwarfism awareness, and the disability community, as well as birth education, pregnancy, breast feeding, baby wearing, cloth diapering... and red wine! I also love to share more lighthearted pieces, like my favorite recipes, talk about travel and beauty, and share tips to make life easier! I love to look good, feel good and do good. I run for charity, write for love, and I am excited to share information relatable to many people on many walks of life.

I finally feel I am just where I'm supposed to be- join me on my journey as I navigate the rest of the way!